I thought I would furnish you with another update. It is now the end of June and I returned from Moscow on 10th April. In this time, I have seen remarkable recovery. I believe that my walking and general coordination, as well as my strength, have returned to levels that were better than they were before I had treatment. My recovery has been as good as can have been expected.
However, over recent days – as in, over the last four days – I have noticed things regressing a little bit. This has really played on my mind as I feel like I have regressed to physical levels near to before I had the HSCT treatment. This makes you feel sensations of doom and gloom as if the treatment might not have worked. I feel that my walking has become a little more faltering and less coordinated and my fatigue levels and lack of ability to concentrate have been affected.
One of the other things that has come back has been what goes on with my legs at night. But for my treatment, my legs used to get really restless before I went to sleep, particularly if I was tired. It is a really uncomfortable sort of restlessness and is often just a sense rather than having my legs be fidgety, though this can be the case, too. Then, often, throughout the night, my legs would spasm and twitch (or my feet) so that, in the morning, my calves and leg muscles would feel tired as if they had been cramping throughout the night. This was because my feet had been twitching every 30 seconds or so right throughout the night, in such a way that I would be getting quite a workout! I have been waking up in the morning with this same feeling in my muscles in my legs. I don't know whether I am definitely twitching but I seem to be feeling the after-effects.
As I say, this has been worrying me quite a bit. However, it has also coincided with the onset of something of a heat wave in Europe, and with summer temperatures here in the UK reaching some pretty good levels. As we all know, heat really affects multiple sclerosis symptoms. Indeed, just before I got diagnosed, I went through my worst period of MS symptoms and this coincided with a six-week heat wave in the UK last year. This is no coincidence as I think I get, like many sufferers, really badly affected by summer heat.
The other thing to consider is the HSCT rollercoaster. For many people, their symptoms after treatment get worse for a year before they get better. I wonder whether I am suffering just a minor setback in the up and down rollercoaster ride that is HSCT?
So several things could be going on here and I could be worrying for nothing, and I hope I really am. The worst-case scenario is that is the honeymoon period is over and I end up being something of a failed responder to the treatment. The best case scenario is that I am merely being affected by the heats of the summer but has finally hit us, or it is part of the HSCT rollercoaster.
Who knows? Only time will tell.
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